ORGANIZATIONS - ALPHABETICAL
Throughout the various tapics on this site are scattered organizations, book recommendations and more. You will always find the fullest information on the page relating to the specific topic or condition, but here you can find all the organizations from across our pages in one master list. We hope that this will help make it easier for you to find connections to their valuable resources.
Ability Online Support Network
Toronto, Ontario, Canada
(416) 650-6207
Web: http://www.ablelink.org
AboutFace
Anna Pileggi, Executive Director
123 Edward St., Ste. 1003
Toronto, ON M5G 1E2, Canada
(800) 665-FACE (3223)
E-mail: [email protected]
Web: http://www.aboutfaceinternational.org
AboutFace USA
Debbie Oliver, Executive Director
PO Box 158, South Beloit, IL 61080
Phone: (888) 486-1209, (702) 769-9264
Fax: (702) 341-5351
E-mail: [email protected]
Web: http://www.aboutfaceusa.org/ and http://www.cleftadvocate.org
Acoustic Neuroma Association
Lois White, Executive Director
600 Peachtree Pkwy., Ste. 108
Cumming, GA 30041-6899
(770) 205-8211 - Phone
(770) 205-0239 - Fax
E-mail: [email protected]
Web: http://www.anausa.org
Adenoid Cystic Carcinoma Foundation (ADEN-CYST)
Nancy Whitman, Co-Chair
Monroe, MI
Web: http://www.paonline.com/knippd/acc/
American Anaplastology Association
MaryAnne BoBrow, Executive Director
6060 Sunrise Vista Dr., Ste. 1300
Citrus Heights, CA 95610-7098
(916) 722-8168
E-mail: [email protected]
Web: http://www.anaplastology.org
American Brain Tumor Association
2720 River Rd., Des Plaines, IL 60018
(800) 886-2282 - Patient Line
(847) 827-9910
E-mail: [email protected]
Web: http://www.abta.org
American Chronic Pain Association
P.O. Box 850, Rocklin, CA 95677
(800) 533-3231
E-mail: [email protected]
Web: http://www.theacpa.org
American Society for Deaf Children (ASDC)
P.O. Box 3355, Gettysburg, PA 17325
(800) 942-2732
(717) 334-7922 TTY
E-mail: [email protected]
Web: http://www.deafchildren.org
Apert Web Page
Don & Cathie Sears
P.O. Box 2571, Columbia, SC 29202
(803) 732-2372
E-mail: [email protected]
Web: http://www.apert.org
Cleft Palate Foundation (CPF)
Nancy Smyth, Director
1504 East Franklin St., Ste. 102
Chapel Hill, NC 27514-2884
(919) 933-9044 - 24 hour cleft line for parents
(800) 24-CLEFT
E-mail: [email protected]
Web: http://www.acpa-cpf.org
American Self-Help Group Clearinghouse
Director, Ed Madara, Cedar Knolls, NJ
(973) 326-6789
Web: http://www.selfhelpgroups.org
Basal Cell Carcinome Nevoid Syndrome
BCCNS Life Support Network
Kristi Schmitt-Burr, Director
P.O. Box 321, Burton, OH 44021
(440) 635-0078
(866) 834-1895 - Toll Free Patient Line
E-mail: [email protected]
Web: http://www.bccns.org
Birth Defect Research for Children, Inc.
Betty Mekdeci, Executive Director
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
(407) 895-0802
Web: http://www.birthdefects.org
Brain Injury Association of America
8201 Greensboro Dr., Ste. 611
McLean, VA 22102
(703) 761-0750
Web: http://www.biausa.org
Brain Tumor Society
124 Watertown St., Ste. 3-H
Watertown, MA 02472
(617) 924-9997 or (800) 770-8287
E-mail: [email protected]
Web: http://www.tbts.org
Candid Camera - Laughter Therapy
Laughter Therapy
Box 827
Monterey, California 93942
Web: http://candidcamera.com/cc7/cc7.html
Candlelighters Childhood Cancer Foundation
P.O. Box 498, Kensington, MD 20895-0498
(800) 366-2223 - Parent Hotline
(301) 962-3520 - All other calls
E-mail: @candlelighters.org
Web: http://www.candlelighters.org
Children's Cancer Association
7524 SW Macadam, Ste. B
Portland, OR 97219
(503) 244-3141
E-mail: [email protected]
Web: http://www.ChildrensCancerAssociation.org
Children's Craniofacial Association
Charlene Smith
13140 Coit Rd., Ste. 307, Dallas, TX 75240
(214) 570-9099 or (800) 535-3643
E-mail: [email protected]
Web: http://www.ccakids.com
Children's Tumor Foundation
95 Pine St., 16th Floor, New York, NY 10005
(212) 344-6633 or (800) 323-7938
E-mail: [email protected]
Web: http://www.ctf.org
Cleft Advocate
P.O. Box 751112, Las Vegas, NV 89136-1112
(702) 769-9264
E-mail: [email protected]
Web: http://www.cleftadvocate.com
Craniofacial Foundation of America
Terri Farmer
975 E Third St., Box 269
Chattanooga, TN 37403
(423) 778-9192 or (800) 418-3223
Web: http://www.craniofacialcenter.com
Crouzon Support Network
P.O. Box 1272, Edmonds, WA 98020
(425) 672-1697
E-mail: [email protected]
Web: http://www.crouzon.org
Cultivating Connections
907 Harris Ave., Ste. 301
Bellingham, WA 98225
(360) 647-5120
E-mail: [email protected]
Web: http://www.cultivatingconnections.com
Dinner Through a Straw
P.O. Box 332574, Murfreesboro, TN 37133
(800) 842-3841
E-mail: [email protected]
Web: http://www.dinnerthroughastraw.net
Face to Face of Indianapolis
Diane Wachendorff
506 Maxine Manor, Brownsburgh, IN 46112-1535
(317) 852-3676
FACES - The National Craniofacial Association
Lynne Mayfield, Director
P.O. Box 11082, Chattanooga, TN 37401
(423) 266-1632 or (800) 332-2373
E-mail: [email protected]
Web: http://www.faces-cranio.org
Fathers Network of Washington
James May, Director
Kindering Center WSFN
Bellevue, WA
(425) 747-4004 ext. 4286
E-mail: [email protected]
Web: http://www.fathersnetwork.org
Forward Face: Helping Children with Craniofacial Conditions
317 East 34th St., Ste. 901A, New York, NY 10016
(212) 684-5860 or (800) 393-FACE
Web: http://www.forwardface.org
Foundation for Faces of Children
258 Harvard St., #367, Brookline, MA 02446-2904
(617) 355-8299
E-mail: [email protected]
Web: http://www.facesofchildren.org
Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.)
1601 Valley Forge Rd., Lansdale, PA 19446
(215) 631-1411 or (800) 545-3286
E-mail: [email protected]
Web: http://www.scalyskin.org
Foundation for Nager and Miller Syndromes
DeDe Van Quill, Director
13210 SE 342nd St., Auburn, WA 98092
(800) 507-FNMS
E-mail: [email protected]
Web: http://www.nagerormillersynd.com/
Freeman-Sheldon Parent Support Group
Joyce Dolcourt
509 E Northmont Way
Salt Lake City, UT 84103-3324
(801) 364-7060
E-mail: [email protected]
Web: http://www.fspsg.org
Genetic Alliance
Mary Davidson, Executive Director
4301 Connecticut Ave. NW, Ste. 404
Washington, DC 20008-2369
(202) 966-5557
(800) 336-GENE - Help Line
(800) 232-1370 - Partnership
E-mail: [email protected]
Web: http://www.geneticalliance.org
Genetic and Rare Diseases Information Center
P.O. Box 8126
Gaithersburg, MD 20898-8126
(888) 205-2311 (M-F, 12 p.m. - 6 p.m. EST)
(888) 205-3223 TTY
E-mail: [email protected]
Web: http://www.genome.gov/page.cfm?pageID=10000409
Goldenhar Syndrome Support Network
Barb Miles
9325 163 St., Edmonton, Alberta T5R 2P4 Canada
E-mail: [email protected]
Web: http://www.goldenharsyndrome.org
Hemangioma Hope
Cindy Dougan, North East, PA
(814) 898-1054
E-mail: [email protected]
Web: http://www.members.tripod.com/~Michelle_G/HHopeN.html
Image Enhancement and Support Center
12300 Montecito Rd., #49
Seal Beach, CA 90740
(562) 431-6276
E-mail: [email protected]
Institute for Family-Centered Care
Beverley Johnson, President
7900 Wisconsin Ave., Ste. 405, Bethesda, MD 20814
(301) 652-0281
E-mail: [email protected]
Web: http://www.familycenteredcare.org
March of Dimes Resource Center
1275 Mamaroneck Ave., White Plains, NY 10605
(888) 663-4637 (9 a.m. - 7 p.m., EST)
011-914-997-4765 - International
Web: http://www.marchofdimes.com
Maternal and Child Health Library
2115 Wisconsin Ave. NW, Ste. 601
Washington, DC 20007-2292
(202) 784-9770
E-mail: [email protected]
Web: http://www.mchlibrary.info
Moebius Syndrome Foundation
Vicki McCarrell, President
P.O. Box 147, Pilot Grove, MO 65276
(660) 834-3406
E-mail: [email protected]
Web: http://www.moebiussyndrome.com
National Alopecia Areata Foundation
P.O. Box 150760, San Rafael, CA 94915-0760
(415) 472-3780
E-mail: [email protected]
Web: http://www.naaf.org
National Brain Tumor Foundation
22 Battery St., Ste. 612
San Francisco, CA 94111-5520
(800) 934-CURE - Patient Line
(415) 834-9970 - Office Line
E-mail: [email protected]
Web: http://www.braintumor.org
National Cancer Institute
NCI Public Inquiries Office, Ste. 3036A
6116 Executive Blvd., MSC8322
Bethesda, MD 20892-8322
(800) 4-CANCER
Web: http://www.cancer.gov
National Chronic Pain Outreach Association, Inc. (NCPOA)
P.O. Box 274, Millboro, VA 24460
(540) 862-9437
E-mail: [email protected]
Web: http://www.chronicpain.org
National Coalition Against Domestic Violence
P.O. Box 18749, Denver, CO 80218
(303) 839-1852
E-mail: [email protected]
Web: http://www.ncadv.org
National Coalition for Cancer Survivorship (NCCS)
Ellen Sovall, Executive Director
1010 Wayne Ave., Ste. 770
Silver Spring, MD 20910
(301) 650-9127
(877) 622-7937 - Publications
E-mail: [email protected]
Web: http://www.canceradvocacy.org
National Dissemination Center for Children With Disabilities (NICHCY)
P.O. Box 1492, Washington, DC 20013
(800) 695-0285 (9:30 a.m. - 6:30 p.m., EST)
E-mail: [email protected]
Web: http://www.nichcy.org
National Fibromyalgia Partnership, Inc.
P.O. Box 160, Linden, VA 22642- 0160
(866) 725-4404
E-mail: [email protected]
Web: http://www.fmpartnership.org
National Foundation for Facial Reconstruction
New York, NY
(212) 263-6656
E-mail: [email protected]
Web: http://www.nffr.org
National Institute on Deafness and Other Communication Disorders
National Institutes of Health
31 Center Drive, MSC 2320
Bethesda, MD USA 20892-2320
E-mail: [email protected]
Web: http://www.nidcd.nih.gov
National Institute of Dental and Craniofacial Research (NIDCR)
Bethesda, MD 20892-2190
(301) 496-4261
E-mail: [email protected]
Web: http://www.nidcr.nih.gov
National Organization for Albinism and Hypopigmentation (NOAH)
P.O. Box 959, East Hampstead, NH 03826-0959
(800) 473-2310
E-mail: [email protected]
Web: http://www.albinism.org
National Organization for Rare Disorders (NORD)
55 Kenosia Ave., PO Box 1968
Danbury, CT 06813-1968
(203) 744-0100 or (800) 999-6673
E-mail: [email protected]
Web: http://www.rarediseases.org
National Organization on Disability (NOD)
910 Sixteenth St. NW, Ste. 600
Washington, DC 20006
(202) 293-5960
E-mail: [email protected]
Web: http://www.nod.org
National Vitiligo Foundation
611 South Fleishel Ave., Tyler, TX 75701
(903) 531-0074
E-mail: [email protected]
Web: http://www.nvfi.org/
Neurofibromatosis, Inc. (NFI)
P.O. Box 18246, Minneapolis, MN 55418
(301) 918-4600 or (800) 942-6825
(410) 461-5213 - TDD
E-mail: [email protected]
Web: http://www.nfinc.org
Northeast VCFS Support Group
2 Lansing Dr., Salem, NH 03079
(603) 898-6332
E-mail: [email protected]
Oral Cancer Foundation
3419 Via Lido, #205
Newport Beach, CA 92663
(949) 646-8000
E-mail: [email protected]
Web: http://www.oralcancerfoundation.org/
Parents Helping Parents, Inc.
3041 Olcott St., Santa Clara, CA 95054
(408) 727-5775
E-mail: [email protected]
Web: http://www.php.com
Phoenix Society for Burn Survivors, Inc.
Amy Acton, Executive Director
2153 Wealthy St. SE, #215
East Grand Rapids, MI 49506
(616) 458-2773 or (800) 888-BURN (2876)
E-mail: [email protected]
Web: http://www.phoenix-society.org
Pierre Robin Network
P.O. Box 3274, Quincy, IL 62305
E-mail: [email protected]
Web: http://www.pierrerobin.org
Prescription Parents, Inc.
45 Brentwood Circle, Needham, MA 02492
(781) 431-1398
Web: http://www.samizdat.com/pp1.html
Proteus Syndrome Foundation
4915 Dry Stone Dr.
Colorado Springs, CO 80918
Web: http://www.proteus-syndrome.org
Romberg's Connection
T. Hildebrand, Chicago Ridge, IL
E-mail: [email protected]
Web: http://www.geocities.com/HotSprings/1018
Rotary International Thousand Smiles Foundation
P.O. Box 606, Bonita, CA 91908-0606
(619) 470-2885
E-mail: [email protected]
Web: http://www.thousandsmiles.org/
Scleroderma Foundation
12 Kent Way, Ste. 101, Byfield, MA 01922
(978) 463-5843 or (800) 722-HOPE (4673)
E-mail: [email protected]
Web: http://scleroderma.org
Self Help for the Hard of Hearing (SHHH)
7910 Woodmont Ave., Ste. 1200
Bethesda, MD 20814
(301) 657-2249 - TTY
(301) 657-2248 - Voice
E-mail: [email protected]
Web: http://www.shhh.org
Sjogren's Syndrome Foundation
8120 Woodmont Ave., Ste. 530, Bethesda, MD 20814
(301) 718-0300 or (800) 475-6473
E-mail: [email protected]
Web: http://www.sjogrens.org
Specialized Training of Military Parents (STOMP)
6316 S 12th St., Tacoma, WA 98465
(800) 5-PARENT or (253) 565-2266 (Overseas call collect)
E-mail: [email protected]
Web: http://www.stompproject.org
Stickler Involved People
International Group Coordinator
KT12 2AZ England
011-441-932-229421
Stickler Involved People (US)
U.S. Coordinator, Pat Houchin
15 Angelina Dr., Augusta, KS 67010
(316) 775-2993
E-mail: [email protected]
Web: http://www.sticklers.org
Sturge-Weber Foundation
Karen Ball
P.O. Box 418, Mount Freedom, NJ 07970
(800) 627-5482
E-mail: [email protected]
Web: http://www.sturge-weber.com
Support for People with Oral and Head and Neck Cancer (SPOHNC)
Nancy Leupold
P.O. Box 53
Locust Valley, NY 11560-0053
(800) 377-0928 or (516) 759-5333
E-mail: [email protected]
Web: http://www.spohnc.org
SupportWorks
Joal Fischer, Director
500 East Morehead St., Ste. 222
Charlotte, NC 28202-2694
(704) 331-9500
E-mail: [email protected]
Web: http://www.supportworks.org
TMJ Association Ltd.
P.O. Box 26770, Milwaukee, WI 53226-0770
(262) 432-0350
E-mail: [email protected]
Web: http://www.tmj.org
Treacher Collins Connection
P.O. Box 156, Boston, MA 02131
(704) 545-1921
E-mail: [email protected] or
[email protected]
Web: http://www.tcconnection.org
Trigeminal Neuralgia Association
925 NW 56th Terrace, Suite C, Gainesville, FL 32605
(352) 331-7009 or (800) 923-3608
E-mail: [email protected]
Web: www.endthepain.org
Vascular Birthmark Foundation
Linda Shannon, Director
P.O. Box 106, Latham, NY 12110
(877) 823-4646
Web: http://www.birthmark.org
Velo-Cardio-Facial Syndrome Educational Foundation
P.O. Box 874, Milltown, NJ 08850
(732) 238-8803 or (866) 823-7335
E-mail: [email protected]
Web: http://www.vcfsef.org
Von Hippel Lindau Family Alliance
171 Clinton Rd., Brookline, MA 02445-5815
(800) 767-4VHL
E-mail: [email protected]
Web: http://www.vhl.org
Wegener's Granulomatosis Association International
P.O. Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
E-mail: [email protected]
Web: http://www.wgassociation.org
Zip-N-Squeeze
Susan Beaudette, R.N.
P.O. Box 575
Yorba Linda, CA 92885-0575
(714) 997-7146
E-mail: [email protected]
Web: http://www.zip-n-squeeze.com